eljomom

What do you guys mean by "immune complexes?" We had a bunch of bloodwork done, and all her immune stuff appeared to be normal....

So why would Igenix say the results were "negative?" I thought they were more geared towards saying things are "Lyme" than not. How long will it take to get in with a Lyme doc? We live in Warrenton, VA, which is west of DC. Dr. L is about an hour 15 from us, so not bad. Any in Virginia? Specifically pediatric?? Thanks, Wendy

Hello, Someone on the pandas forum told me I should post my daughter's Igenix results here for help understanding them. Dr. Latimer's receptionist (the pandas neuro. we saw last month, who ordered the tests after daughter's CamK was very high, and also LabCorp Lyme had IgG and IgM band 41 positive) left a message that her results were "negative." I don't want to force my daughter into a Lyme diagnosis, but just want to understand these results. Looks like according to Igenix they are negative too. Daughter will be 7 next week. We live in Virginia--Shenandoah area. Her symptoms were ocd-ish stuff past couple years, then a few tics late spring. High fever in June for one day, then within a week or two, multiple tics from head to toe, with no waning. Also had impetigo off and on all summer. Thanks for any info. IFA B Burgdorferi G/M/A 1:40 Titer CD57 NK Test "Lymphocyte count is above normal limit. test result may be compromised." CD57 NK Cells Absolute CT 243 CD57 NK Cells (5 Lympho) 5.40 Lyme IgM Western Blot: IGENIX IGM RESULT Negative CDC/NYS Result Negative 18 - 22 - **23-25 - 28 - 30 **31 ++ **34 - **39 **41 IND 45 - 58 + 66 + 73 - **83-93 IND Lyme IgG Western Blot: IGENIX IGG RESULT Negative CDC/NYS Result Negative 18 - 22 - **23-25 - 28 - 30 + **31 - **34 IND **39 - **41 ++ 45 - 58 + 66 - 73 - **83-93 -

Hello, Someone on the pandas forum told me I should post my daughter's Igenix results here for help understanding them. Dr. Latimer's receptionist (the pandas neuro. we saw last month, who ordered the tests after daughter's CamK was very high, and also LabCorp Lyme had IgG and IgM band 41 positive) left a message that her results were "negative." I don't want to force my daughter into a Lyme diagnosis, but just want to understand these results. Looks like according to Igenix they are negative too. Daughter will be 7 next week. We live in Virginia--Shenandoah area. Her symptoms were ocd-ish stuff past couple years, then a few tics late spring. High fever in June for one day, then within a week or two, multiple tics from head to toe, with no waning. Also had impetigo off and on all summer. Thanks for any info. IFA B Burgdorferi G/M/A 1:40 Titer CD57 NK Test "Lymphocyte count is above normal limit. test result may be compromised." CD57 NK Cells Absolute CT 243 CD57 NK Cells (5 Lympho) 5.40 Lyme IgM Western Blot: IGENIX IGM RESULT Negative CDC/NYS Result Negative 18 - 22 - **23-25 - 28 - 30 **31 ++ **34 - **39 **41 IND 45 - 58 + 66 + 73 - **83-93 IND Lyme IgG Western Blot: IGENIX IGG RESULT Negative CDC/NYS Result Negative 18 - 22 - **23-25 - 28 - 30 + **31 - **34 IND **39 - **41 ++ 45 - 58 + 66 - 73 - **83-93 -

Just seems to say that these are elevated in pandas AND tourettes---which makes it very difficult to decide treatment:(

I'm wondering if there are any reports or explanations here regarding the antineuronal numbers on Cunninghams tests and how they may help decipher between Tourette's and pandas?? Dr. L was more interested in those numbers than the Cam K of 168 for some reason. The paper that Cunningham sends only talks about Cam K (the one with the charts/graphs). Thanks

We have not gotten an official diagnosis yet. So until then, I'm afraid to try steroids if this may just be Tourette's/ocd/ADHD/sep. anx., as i have read that steroids are bad news in that case. Not sure why, but scared. Dr. L was "not convinced" pandas based on Cam K being 168---wants to see antineuronals.

That seems to be a question noone can answer....I am looking at a very similar situation. Cunningham camK was 168 (high) and dr. Latimer was not sold on pandas. Waited for antineuronal antibidies results---got them a few days ago. Anti-lysoganglioside was twice high normal, and anti D1 was 4 times highest normal---but still noone can say. In cunninghams letter to parents, she says these antibodies are often elevated in pandas, tourettes, and sydenham chorea....so not sure how they really help to decipher between touretteS and pandas. We have had issues (started w/ocd-ish stuff a couple years ago) that I thought were quirky, but now its been so long, 3 tics started early spring, then after high fever in june, head to toe tics with no letting up. On augmentin 3 weeks now. No improvement. Strep titers normal, myco norMal, lyme and igenix lyme normal. So I guesss I really do wonder why the cunningham tests are so important if everyone just says they are "research" and not definitive??? Thank you for sharing. Maybe bedwetting would fit in here, maybe some of his emotional outbursts (cries when upset over little things or misunderstandings) and perhaps his fidgity-ness at the dinner table - he can't seem to sit still sometimes, teacher also noted he was fidgity at school-for example during circle time. There are periods where he'll wet the bed more often - it usually happens just before he gets sick. He is usually a fairly solid sleeper, although sometimes he'll grind his teeth and talk in his sleep - magnesium seemed to help a lot with this. Would this fit into the picture? If at this next neurolist appt we can do the tests for Cunningham's and those listed above, do you think we'd be able to figure out a clearer direction to pursue - PANDAS or transient tics? Does it work that way? Thank you again for sharing and helping us along, Jennifer

So just another thought about this---tics often get worse with excitement---thanksgiving, friends visiting. ONce home and back to normal, tics minimize??

what can close the BBB? and are there only problems when it's "open"? sorry, but very confused.

I am wondering about the blood brain barrier.....once it is "breeched" does it close back up again? How? Also, if tics started suddenly and strong, and it's been 5 months, why is there no "back to normal" after "exacerbation?" Or is it now just chronic pandas. Lyme negative (W. blot and Igenix), no strep, no myco p....so wondering....

Just curious about pandas kids reacting to strep in the environment---wouldn't they have some sort of positive ASO or Anti-dnaseB from that? Or get strep?? Don't really understand this.

What treatments have you tried---anything helped with the tics??

thanks! did that do it?

I know---how do i edit??? Quick??

Just wondering....are allergies an "autoimmune" response?? If so, can they cause the high CamK??? Or are they just an "immune response"? thanks!

Just got my daughter's antineuronal antibodies results, but they don't make sense. She has mainly tics, some ocd, hyper, sep. anx. Also, her CamK was 168. Dr. Latimer said that number doesn't convince her it's pandas, and that the antibodies are what she wants to see....hoping to hear from her soon about these latest results. Draw date 10/7/2010 Anti-neuronal Antibody Titers Anti-Lysoganglioside 2 hours patient 320 positive control >1280 negative control 80 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 500 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 4000 positive control 16000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 32000 negative control 2000 normal range 2000-16000 normal mean 6000

Yup--500 mg/5 ml. When she had impetigo this summer, ped. Put her on that dose @ 1 tsp 2 x per day...

Just got a call from Dr. Latimer's office that the receptionist called in the RX for my daughter. She weighs 45 pounds, and Augmentin 500 mg/5 ml was called in @ 2 Teaspoons 2 X a day. Doesn't that seem high??? Thanks

Just curious what her "protocol" is for treating pandas/pitands? She seems conservative.....does she do/recommend IVIG, etc.? Steroids?? Or just antibiotics?? Also, does she recommend supplements? thanks.

I saw this on Buster's FAQ's---and I'm wondering HOW they help separate??? Are these the one's Cunningham tests? We are still waiting on those, got the cam K, but Latimer wants the others---says they are more helpful, and want to understand why/how? " Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006]."

So I'm sitting here with my husband, and was trying to explain this to him.....wondering if a huge blow-out arguement we had this spring could have opened the BBB and caused this?? He's a german-italian, need i say more?? Also, what is "psychosocial stress"? I keep seeing it in Leckman's writings as "indicator of future tic/ocd severity."

Was just reading over some older posts, and saw this from P.Mom's visit with Dr. C: "Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier." So if a child gets stressed, like when they are having major separation anxiety somewhere, the BBB is opened and antibodies are getting in??? If that happens on a regular basis, then wouldn't the child just keep on having problems? So if a child lives in a "high stress" home, maybe marital issues, etc., then would they then be more likely to have "chronic" pandas with no remitting of symptoms? This worries me!

well, after seeing my daughter, who seemed "calm" but to me was "paralyzed with anxiety"---she just said that her handwriting and drawing are fine, and no chorea. that you usually see a decline in handwriting...it gets really really bad, etc....

KaraM--My daughter sounds more like you---with symptoms slowly building, then bam--explosion of tics. Her cam was 168---that wasn't enough for Dr. L to be confident. Based on her handwriting being okay and no chorea....